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I don’t mean to be melodramatic but quite a few times of late (well since the end of January) you will have found me fighting back the tears. It doesn’t happen in “real” life that often, it takes quite a lot to get my dry eyes leaking, it’s just the level of pain I am in is increasing and I just don’t know what to do with myself.

I have already written about how bad my neck is and how it is triggering migraines. I am in pain with my back from between my shoulder blades, up to the base of my skull, behind my eyes, forehead and down both arms. What a gigantic ball of fun I am! Tilting my head up is causing me to get dizzy, tilting my head down is causing spasms of pain. I am currently managing approximately 1-2 days out of bed the rest of the time I can be found lying flat on my bed or on the sofa. Lying flat is the only position that takes the edge off the pain in my head and neck. I have a feeling that my neck has become highly unstable, I think it’s highly likely from doing a bit of research I have a herniated disc or discs.

I know I sound like doctor Google the kind of patients doctors hate but I have to point out if you are a new follower to this blog it was me that diagnosed EDS and PoTs back in 2010. It took me a year of badgering my then gp to access a consultant who would confirm what I already knew. I have done all the stuff I can to sort my neck out, I bought a new support pillow, I try to avoid all the things that I know make it worse. How I curse those bloody stomach crunches (which were part of my gentle Pilates routine) I attempted in January which started this mess. One wrong move and I have come a cropper.

The tears have been shed for a variety of reasons firstly the level of pain I am experiencing. If my gp or whomever I am referred to for this decides to put this under the heading of EDS and I am told I will have to learn to live with it I don’t know if I can do that. The thought of facing everyday of the rest of my life in this amount of pain, unless I lie flat is just too much to bear. I am only two months in. I always tell myself “this too shall pass” and indeed I have had neck pain before but it has never gone on so long or woken me from my sleep. The headache that accompanies the neck pain feels very much like the headache you get after a lumbar puncture (if you are lucky like me and one of the 10% or so who suffer with this afterwards).

Secondly tears have been shed through frustration when the pain is at its very worst I can do nothing except lie in a darkened room, with a heating pad on my upper back and a hot water bottle on the back of my head. I don’t think what I have is cluster headaches or migraines as the pain of those is very different. I do get very light-sensitive when it’s bad, I also can’t hold my head up as my neck muscles refuse to co-operate. My head drops backwards onto the top of my back and my shoulders hunch in an effort to keep my head up. Every day at some point I resort to wearing a soft neck collar as this takes the edge off the headache. It used to be once the neck collar was on after an hour the pain would go, it doesn’t any longer. I am left with a low-grade headache, like a nagging toothache. It is something I am constantly aware of.

I have a doctor’s appointment in April, unfortunately my doctor is on annual leave so I couldn’t get one sooner. I don’t trust any other doctor at the practice except him and this (currently) isn’t an emergency, it isn’t something that has suddenly come on it has been bubbling away under the surface for some weeks now. April will soon be here but I also know my gp can not wave a magic wand, if I am referred to a consultant it will still be weeks waiting for tests etc to find out what is wrong.

Hubby has five days off over Easter and we had plans, they’ve been thrown into disarray (yet again) because other than lying down there is very little I can do. We will make the best of it like we always do but I am tired of losing so much of our precious time together. I try not to reveal how much I am struggling to him (he doesn’t do reading, although he does occasionally read my blog) although I guess he isn’t oblivious to it.

I am sorry that this post is such a downer, my neck is currently stuck in a collar whilst I try to balance my chromebook in such a way that I don’t look down and don’t move my arms around because they hurt so much.

So excuse me whilst I sob quietly in the corner, trying very hard not to let the pain overwhelm me.

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For the last few days I have been in a bit of a funk, not enough sleep, too much pain and ridiculous brain fog / confusion will do that to a girl. I try very hard not to worry about the confusion but I have to say Sunday’s episode scared the living daylights out of me.

I have of late had horrendous neck pain, it wakes me during the night, in the mornings I can be ok for an hour or so and then the pain starts. Initially it feels like someone has given me a swift smack with a shovel to the back of the skull. Then the pain travels to between my shoulder blades and down my arms. Any movement of my head outside of a neutral position increases the pain. Whilst typing this there have been points where the Chromebook has nearly been thrown out of the window due to frustration with the pain.

Sunday was one of hubby’s days off, time together is precious as of late pain and the lure of the current storyline of The Archers (soap opera on BBC Radio 4 for my overseas friends) has meant it’s bed time just before 7pm. We had a list of jobs that we wanted to get through one of them being cooking hubby’s meals for the month ahead. We make a variety of things chicken casserole, chicken curry etc and put in the freezer, portioned out ready for when he gets home from work. I say “we” but really he does the bulk of the work due to my inability to hold a knife for a long period of time without my hands giving up the ghost. I like the time we spend cooking as we chat with no distractions other than Mollie (dog) begging for bits of raw vegetables broccoli and cauliflower being a particular favourite.

I have found the longer I sit up, the worse the headache becomes unless I wear a soft neck collar or lie down. The soft collar is something I hate wearing, it is mainly vanity, I look hideous with a neck collar on. I know it’s hardly haute couture on anyone but to me it marks me out as someone who is disabled, I am the same about the wheelchair however the neck collar is something I am struggling to accept. Despite it being rather a necessity these days to stop the headache as I can’t spend my life horizontal. I didn’t wear it Sunday and the pain in my neck / head / back and arms increased to a horribly violent level. I also noticed that the longer I sat up the more confused I was getting.

When I say confused it is more like I can’t remember things, I suppose in the grand scheme of things it is a kind of confusion. It was so bad on Sunday that it freaked out both of us. Whilst we were cooking, I pointed to a kitchen utensil, I just couldn’t remember what it was called. Now before I got sick I did all the cooking, I loved having people over for Sunday lunch etc. So to not know what the utensil was called frightened me.

This was the conversation:

Me: “Jay what is this called?”

I saw the look on his face that was saying what the fuck is going on? I think initially he thought I was either joking or testing him. When I asked again he knew I was serious so he asked me

Jay :“What do you think it’s called?”

Me : “ A cauldron”

I knew in my head that the utensil I was pointing to was not a cauldron, there could be a tenuous connection to a cauldron, so I was going along the right track. I knew in my head that it wasn’t a cauldron but the word wouldn’t come.

Jay: “It’s a ladle”

“I knew it wasn’t a cauldron” I replied followed by a nervous laugh. I then left the room heart pounding because I was so wound up by not knowing what it was called.

I can’t lie this latest bout with mental confusion upset me and shocked me enough to make me realise it is time to take it seriously. I am still really concerned by it. To have a complete mental block like that isn’t unusual however the cauldron / ladle incident was just the first of many on Sunday. What I found really bizarre was that I could type fine but my speech was the issue. It seemed the words were getting lost on route from my brain. I was doing my usual of replacing the word with a completely different one, that is normal (for me) but to be unable to name a household object and know the word I wanted to call it was completely wrong was distressing.

Hubby was frightened by it too although he did his best to cover it up. Explaining that I was just probably tired from helping him. I have been tired before, it’s never happened. I don’t think either of us can keep making up excuses for the level of confusion that I am suffering from – forgetting if I have taken my tablets (when you take opiates it’s quite important to know), forgetting something immediately after I have done it ( I spent 15 minutes looking for a pillow today, I had put it on the bed seconds earlier), forgetting what shift my husband is working, forgetting what day it is and being completely convinced it’s a different day. It is getting worse and I can’t keep on burying my head in the sand thinking it is going away because for weeks now it hasn’t.

The problem is a few months ago I spoke to the doctor after another particularly bad bout of confusion. I had completely messed up in my head what shift hubby was working, which resulted in me making a snarky phone call to him asking why he hadn’t rung me on his lunch break. The problem was it was now 2pm and he had started at 1pm, his lunch break was hours away. I had forgotten he had been with me all morning in the hour he had been gone. I was also at that time messing up taking my medication taking too much or too little. The doctor helpfully suggested that I write down when I took the medication failing to realise that firstly I had to remember to write it down and secondly remember to look at the notepad before taking any more. When you already have memory issues asking someone to remember more is not helpful.

I know memory lapses are normal, we all have moments where we walk into a room and forget what we have gone in there for. I understand that, what I don’t understand is why at the age of 42 I am struggling with basic things like friends names, some of these people I have known for over 10 years. I struggle to remember to keep in contact with friends thinking that I have only just text them / seen them. It’s not that I don’t want to keep in contact, I just forget.

Before I got sick I had a photographic memory, I could read a policy document, ascertain the salient points and brief the rest of the management team after barely a glance. Now I am lucky if I can remember important dates on hospital correspondence. To go from that high functioning to this is distressing. It is the not knowing why it’s happening or if it is likely to get worse that bothers me.

My long-term memory seems largely unaffected, I may get hazy over exact months but I know the year. I may struggle to explain a memory due to the fact I can’t remember the words (that items, jobs are called) but on the whole it’s all still there. I can recall important dates from my life but things like my parent’s wedding anniversary had me foxed in February. I couldn’t remember what the date was and was convinced it was the day after the actual day. I had to check on the “On this day” section on Facebook to ensure I had got it right. This is something we have celebrated as a family for years but now suddenly I don’t remember? It doesn’t make any sense to me.

I spent years trying to get doctors to pin down a diagnosis. Those years spent without one were deeply frustrating. I couldn’t bare to go to the doctors about my memory issues and be told they don’t know what’s causing it. On the other hand I am driving myself insane with worry with all the things it could be. I need to stop putting it off and just make a bloody doctors appointment.Procrastinators of the world unite…..tomorrow.

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I’ll be honest no one has ever told me that I don’t look sick. I am normally told “you’re looking well”. I did get quite close to being told “but you don’t look sick” one day last week and it really irritated me. I wonder how someone can judge from a couple of photo’s if I look sick or not?

The problem is most people don’t know me well enough to be able to know when I am looking sick with or without makeup. They only “know” me through the internet, they only see the photographs that I am happy to post on my social media feeds. I’m hardly going to post hideous photographs of myself that will be out there for all eternity. Although to be fair over the years I have posted some shockers! My family can spot when I am really sick a mile off and so can I but when you are naturally very pale the difference between normal and feeling terrible can be very subtle. When I am very sick the colour drains from my face or I can look quite yellowy. Unless you have seen this on a regular basis in person, it can be very difficult to spot. So it does get frustrating when people see me or photographs of me and say “you’re looking well”, when inside I feel truly dreadful.

I have decided over the last few days to start wearing makeup again in an effort to feel more human. I am fed up with the sick pasty white face staring back at me when I look in the mirror. I also posted the photo’s on my The Myasthenia Kid facebook page and my Instagram account unfortunately by doing so I have inadvertently fallen foul of those who claim you can’t look good whilst feeling like your head is going to explode.

For two days last week I had back to back migraines. Both occurred on days that I had put on makeup. Clearly my applying makeup had nothing to do with the migraines, it was just really shitty timing. By posting these photos I fell foul of the chronic illness police (CIP) as when you are sick you must never ever smile, pose for photos or look like you are enjoying yourself. It’s just not on and you’re letting the side down when you do. There is a really judgemental side to some of the people within the Chronic illness community however it isn’t solely confined to this community. It seems many online groups seem to hold their members to standards higher than are humanly possible. This is the picture which exposed me to the wrath of the CIP.

Apparently you are only allowed to look like this (photographs below) when you are chronically sick

The thing is I don’t want to look like that all the time to fulfil society’s expectations of long term chronic illness. Sometimes I like to remind myself of the old me. The person who wouldn’t step outside the house without makeup on. Who dressed nicely instead of wearing what is comfortable, the majority of my days are spent in lounge pants. Just occasionally I like to remind myself that I can still be the old me just a massively revised version. I won’t apologise for wanting to look nice or for getting dressed. Its up to the individual how they live their lives and present themselves to the outside world. If you want to or have to wear pj’s for the rest of your life I will defend your right to do so. However I expect you to have my back also and not judge me because you don’t think I look sick enough.

Taking a few minutes to put some makeup on lifts my mood, low moods are something I suffer with on a regular basis especially when I have been enduring periods of social isolation. Its very easy to sit in judgement of someone when you haven’t walked a mile in their shoes. For days on end the only person I see is my husband or the postman. The social isolation can really play havoc with your mental state, so anything that lifts my mood in my book is a bonus. I have spent much of the last 9 years not caring about my appearance and I know now that has spoken volumes about my low mood.

There are days when I don’t have the energy to have a shower or get dressed but on the days I can I want to feel good. I shouldn’t have to justify that to anyone, let alone others within the chronic illness community. To have someone doubt the validity of my illness due to the fact that they perceived I looked well and had makeup on was a massive slap in the face. Anyone who actually really knows me, you know in the real world would tell you how deathly pale I was looking, how much my eyelids were drooping etc. Things that you wouldn’t notice because you don’t know me.

I suppose I only have myself to blame for posting photographs online for my followers to see. I have been posting many more of them this year as I have such a distorted view of myself that I need a kind of over exposure therapy to stop me focusing on all my perceived faults. It hasn’t been vanity or fishing for people to pay me compliments. I don’t believe a word anyone says when they compliment me anyway online or in the real world. My body issues have been around for many years so a few words on a screen aren’t going to change my mind. Sometimes I do dare to think I look pretty but those thoughts are fleeting because as I scrutinise the photograph I find fault with something. The faults I find have nothing to do with looking sick enough and more to do with the ridiculously high standards I hold myself to.

It’s a double edged sword having an online presence, when I post pictures of myself or my dogs I get higher viewing figures across all the platforms I use. If I didn’t “market” my blog I wouldn’t get any followers or regular readers. I am not prepared to hide away just because one person doesn’t think I look sick enough. I won’t lie it hurt to be judged in this way, this person has made an assumption based on one photo. If they’d bothered to read my blog they may have more of an understanding of what life is like for me, well the bits I am prepared to share anyway. I never thought I would hear the words or close to them “But You Don’t Look Sick” uttered by a member of the chronic illness gang and I hope I never do again.

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Last week I finished the post by telling you all how excited I was that I was going to get out of the house for the first time in months. We did get out and on the whole is was a nice trip out but there were a few incidents that occurred whilst I was out of the house that shocked and upset me.

Over the last 9 years I have been pretty lucky in the fact that no one has abused me in the street for my disability. My sister, friends and acquaintances have told me about their experiences at the hands of Joe public and some of it, well all of it has been truly shocking. Until yesterday I felt like I was in a protective bubble, maybe others saw me as I saw myself, a strong and confident woman. Yesterday made me realise that some people only see the disability or my wheelchair and everything after that doesn’t matter. They don’t care about your disability because as far as they are concerned you are a big fat fake. Yesterday’s events have shaken me to the core.

Hubby and I decided to take a trip to Exeter our nearest big city. In the past and I have to say if I am honest yesterday as well, we have always been impressed on how much people help us with simple things like opening doors or wrangling children that are determined to run in front of me. So I wasn’t concerned with being abused for being unfortunate enough to use a wheelchair. I had heard horror stories from others but they hadn’t taken place in Exeter. We had some gift vouchers to spend and there were a couple of shops we wanted to have a look around. It wasn’t anything special just some time together with the dogs being looked after by a friend.

The first hour of our trip was uneventful, I am not going to name any of the shops where incidents occurred because they have no control over the general public’s behaviour. As we approached a checkout in the first shop, there was a woman being served. We loaded our things onto the belt and waited to be served. Hubby turned to me and said “Do we need bags?” to which I replied “no I brought some with me”. As I spoke to him the woman customer stopped packing up her shopping and then looked me up and down. The look was of disgust, there was no smile or anything else for me to confuse her emotion with. She looked at me as if I had just taken a giant turd at the bottom of the conveyor belt. I brushed it off, this woman was the one with the problem not me. I don’t know what it was about me that disgusted her. It could have been the wheelchair or it could be that is how she looks at every stranger. I can’t say I was treated any differently because I was disabled but it made me uneasy. This had never happened to me before…..ever, pre disability or post. The woman left without saying a word and we got on with the business of packing and paying for our shopping.

We wandered around a few more shops and after an hour or so I needed the toilet. There is only one disabled toilet (that we know about) that isn’t confined to either genders, which means that Jay can come in with me or help me get into the bathroom. When the disabled toilets are part of a female block I can’t use them as I can’t maneuver my wheelchair adequately enough in tight spaces. Once in I wouldn’t be able to get back out again. Of course this toilet happens to be on the top floor of the store and the stairs are a no go, I’m not into extreme sports.

We patiently waited for the lift to arrive. When it did inside there was one heavily pregnant woman the other woman had a pram. We made our way towards it and one of the women inside the lift turns to the other and says “Oh we’ve got the wrong floor” and shuts the doors on us. Again I can’t say that this was down to the wheelchair, I think it was mainly down to selfishness and ignorance. I am really annoyed now, so as the lift door was closing I shouted “cheers love!” in a sarcastic passive aggressive British way.

The next lift arrived swiftly and we hopped (well obviously I didn’t) aboard. We arrive at our floor and Jay pushes me towards the disabled toilets. Guess who we bump into ? Yep pram lady. She is blocking the access to the disabled toilet. She was much more helpful this time ( and also blushing) she told us the disabled toilet was in use but there was a family bathroom around the corner. Unfortunately that was engaged so we trundled back to the disabled toilet at the exact same moment her friend the heavily pregnant lady comes out.

I could have gone mad, shouted, sworn but I didn’t. You see she could have had a disability and be using the disabled bathroom for legitimate reasons. Who am I to judge? When I first got sick, I didn’t actually look sick, I was walking unaided etc. There was nothing that just by looking at me that would tell you I was disabled, obviously now the clue is the wheelchair but even then people still think that you are faking such is the hostility towards disabled people in this country. I was angry though because if she had been selfish enough towards me at the lifts then I really wouldn’t put it past her to use the disabled toilet when she didn’t have a disability.

I had been dismayed at the treatment I had received but I shrugged it off. People are selfish / weird sometimes and I wasn’t going to let it ruin our day out as they are so few and far between. We decided to leave the city centre and make our way over to a retail park on the outside of the city. We planned to browse at a couple of stores but our treatment in the first store meant our trip was cut short as I was too upset to continue.

We had heard a lot about this discount store and were looking forward to having a nosey around. Hopefully picking up a few household bits, nothing very exciting. We spent about 30 minutes in the store and it had been a successful shop. I had picked up a new curtain rail for my bedroom, plastic pint glasses for our summer party, dish brushes (which have become like gold dust for some reason), as you see nothing very exciting but I had got to pick them out and make decisions for a change. The checkouts weren’t very busy and when the customer in front of us had finished I manoeuvred myself down to the end of the checkout so that I could pack our shopping.

I should have realised we were in for a rare treat when the cashier didn’t even acknowledge our presence. As an ex checkout manager I know that customers should be greeted. A simple “hello” is not too much to ask. We were met with stony silence so we just decided to let that slide, thinking maybe the cashier had, had a shitty morning. Jay stood in front of the cashier as he was holding the curtain rail so that she could scan it as it was too bulky to make her put on the belt. As he also has experience with checkouts he likes to makes things easy for the cashiers. He held it up for her to scan, which she did but there was no acknowledgement or thank you. Yeah you can tell she went to an expensive charm school!

As I said earlier in my previous life I was a checkout manager, customer service was very close to my heart. I also know quite a bit about a checkout design but I won’t bore you with the details apart from they are designed for both the operator’s and the customers ease of use in mind. So if a checkout is designed without a back belt, it is made so the cashier naturally places the items after they have been scanned towards you. To place them anywhere else on the belt uses extra movement and twisting which if done repetitively is bad for the operators back, costing the company a lot of money in repetitive strain injuries claims. So I am not your average customer who knows nothing about how these things work.

Our cashier obviously had a problem with me / my wheelchair / my disability as with each item she moved it further and further away from me. So that I was reaching over the metal lip (at the back of the checkout that stops your goods falling onto the floor) and right across the back of the checkout. As I was packing an item I looked up but not in a way that was obvious, to see the cashier lift an item that she had already placed on the back belt (it’s still called that even when there is no back belt) and move it further away from me again, smirking to herself as she did so. I was stunned, initially I just thought she was an ignorant sod and clearly lacking in the common sense department but now I had just witnessed her deliberately moving an item. I was stunned, shocked into silence. Jay paid the woman and then grabbed the item that I had been unable to reach. It wasn’t until we got to the car that we spoke.

Jay had also seen the cashier deliberately move the item. Initially he thought that maybe the item hadn’t scanned and she was going to try again. Then when he saw her move the item further away from me, he realised what she had been up to. He had hoped that I hadn’t seen her do this but by the time I got to the car I was already in tears. We were both fuming. We just couldn’t believe that someone could do that to another person.

I was too cross yesterday about what had gone on to talk about it much. I also didn’t want it to overtake the whole of our day and ruin it. This morning though I was angrier than ever. I found our receipt and I emailed the company with the cashiers operator number, checkout number and the time we went through the till. Obviously having a retail background really helps in this situation as I know more than the average shopper.

I also posted about it on my own Facebook page and understandably people were outraged that someone could be so vindictive and malicious. I have so far refused to name the store where this occurred as I want to give them 7 days to respond. If they don’t respond I will write to them, if there is no response after that I will turn to social media. I don’t want the operator sacked but I do want her disciplined and informed that this behaviour isn’t acceptable. I don’t care what she thinks about people with disabilities outside of work but she needs to realise that in work she is representing the company she works for. Her actions have consequences and If I am unhappy with the company’s response I will not let it drop.

I thought that I was too old and wise to let myself be affected by this kind of childish behaviour but I have to say it really has knocked my confidence. I feel now that when I leave the house in future I will have a target on my back and will be abused again.

I am also angry that I didn’t say anything at the time but I just couldn’t believe that another person would think treating me that way was ok. I felt humiliated and degraded in a way that I have never been before. I have always been so sure of myself, my nickname at school was zippy as I was so gobby, people wished I had a zip on my mouth (like the character from the children’s TV show Rainbow). I hope that by making a complaint now rather than letting it go will prevent others being mistreated at this woman’s hands. Disabled people have spending power and it would be foolish of any business to allow this kind of medieval attitude to disability prevail.